Boyfriend Update ~ Pollyanna is STRUGGLING!

[islandgirls]

He was supposed to have 4th Triplet infusion on Monday. No go because he is anemic. 

He has lost about 25 lbs since diagnosis Feb. 1st, and has really been hit hard after his third tx with fatigue, no appetite (not really nausea) and continues to have major sleeping issues. Going to add in here that he started at 230 lbs and ate like a third grader before cancer... steady diet of Mt. Dew, Cheetos, candy bars, etc. so some of the weight loss was his sudden aversion to junk food... The anemia makes perfect sense as a side effect of treatment and his lack of eating, so I was not really upset about not doing the last treatment. Oncologist said he wanted scans to see if there’s progression because of his myriad of symptoms.

Right away I knew I should have gone to the appointment... not that he is exaggerating, but by being on here snd seeing all of you guys’ stories and side effects, I would say Boyfriend is doing pretty well.

HOWEVER, his daughter went with him to the appointment. Remember she is incredibly NEGATIVE... Today I read his MyChart (am on his HIPAA) and saw oncologist stated if scans come back with progression that the patient “and his daughter who is his power of attorney” are interested in hospice and do not want further medical treatments with no interest in trials.

I ABOUT FELL OUT OF MY CHAIR.

After I started breathing again, I called Boyfriend. He clarified that by saying he told oncologist he didn’t want to do a trial now until the scans show what is going on. But he is still open to the idea depending what the trial entails. I am pushing hard to get him to Anderson. We are in St. Louis at Siteman.

The problem remains to be DAUGHTER who texted me today about something else and said the next step was hospice because “He is getting worse and worse every day.”

She is out of her FREAKING mind. Or maybe my Pollyanna glasses need adjusting.

I think his current state is 100% chemo/immunotherapy related!!!

So I ask you:

1. He just started having excruciating arm pain that is mimicking his previous (still present) leg pain... says it feels like someone is trying to pull his leg/arm off.

2. Upper back shoulder pain.

3. Rib/chest pain

He has confirmed osseous lesions in spine, sternum, leg, etc.

Obviously still pretty wiped out, but starting to eat a tad better. Last infusion was April 22nd.

I once again feel soooooo frustrated, but try to focus on his response when I ask him about further treatment as he seems receptive to it. But Geeze!!! 

Any input on the pain is most appreciated. I mean maybe I’m underestimating the possibility of rapid progression but his last scan was March 31st and showed partial response. Remember we have NO PET scan yet as oncologist was going to do one two weeks after this canceled treatment. So his first scan was Feb 1st, then no scan before tx started on March 12th. So scan on March 31st could have actually showed a response because who knows how much the stuff grew between diagnosis day and treatment day...

It’s hard enough seeing him weak and miserable, but add in the horrid attitude of his daughter (a nurse no less) and I am about to drink a bottle of vodka or beat my head against the wall...

Oh, and he started THC. Started 5 mg indica to sleep. Didn’t work. Last night did 10 mg and the arm pain woke him. Tonight trying 15 mg and he’s been sleeping next to me now for 45 minutes... fingers crossed he’s out for the night and big fingers crossed for scans on Saturday!!!

Thanks for listening! 💜

[LexieCat]

I'm so sorry--that must be incredibly frustrating. If you're on his HIPAA, doesn't that mean you can talk to his doctor directly? I forget, has he seen a radiation oncologist about the bone mets? That can provide a lot of pain relief. It's not always practicable, but seems like it might be worth a consult. 

And as far as trials go, my own doc (who is a researcher, himself), told me that with progression after the triplet, there are literally hundreds of clinical trials for which I might be eligible. And those are scattered all over the country. Lungevity and the Go2 Foundation both have services to match patients with clinical trials. You might try that first. MD Anderson isn't the only place where you can do clinical trials. 

 

[Judy M2]

What a crazy situation. Take it from someone who literally almost died from treatments, there was a point in the ICU after emergency abdominal surgery (necessary to keep me alive) when I was so sick, in a great deal of pain and was ready to die. I can understand not wanting to see your loved one suffer, but I'm glad no one pushed me into hospice care at that time. 

I was also anemic at one point after treatment and had lost a lot of weight. Anemia can be treated. I can't recommend palliative care enough. It can help with pain, sleeplessness and quality of life. As Lexie says, radiation might help with pain. 

Sometimes in treatment you go to the absolute lowest point and can't see how it's possible to get better. I'm living proof that it is. If and when I get progression, I will certainly try to get into a clinical trial. 

Perhaps you can call his oncologist with your BF when he gets his next scan results. Or be on the phone during his next appointment. (I don't go for in-office visits anymore, it's all by phone or virtual.) Try to add your voice of reason so the oncologist understands that the goal of treatment isn't hospice and it's not just a futile exercise in your BF's case. 

[TJM]

I am so sorry. Some may find what I am about to write uncomfortable...so be warned.

I wish I could share the story of the husband of a dear friend. He passed on May 1st after a very long ordeal. He was both a psychologist and a Nuero surgeon. To be blunt he fought like hell for many many months. Unfortunately his colon cancer was found much too late and he did not respond to treatment but he kept trying. Some of the ordeals they went thru brought me to tears, and made me consider the dark side more than once. It is nothing anyone would want. Why write this?

First. What he went thru had nothing to do with treatment or side effects. His treatments were almost all done for palliative, not curative or even life prolonging. His misery had zero to do with Chemo, radiation, immunotherapy or clinical trials. It was, in fact, the natural progression of the disease. My lesson from this is that avoiding treatment to avoid side effects does not mean you go quietly into the night. I learned from him that my best chance for not suffering was to try to beat the damn cancer. There is no treatment nor side effect I have ever heard that comes close to his misery. He was a doctor so his care, including palliative care, was the best. My point is there is no dodging it except for assisted suicide...which itself is not what most think it is.

Second, and this is just me surmising, I doubt his caregivers are going to invest in him if he wants to die. Would you if you were in such a difficult field of medicine that till recently was more often associated with failure versus success? How much energy and emotion would you expend on someone who has given up? I'm guessing not much.

Feel free to share this with his daughter if you wish. I sure hope her motivation is one of compassion versus something else.

I am assuming his oncologist et al are still hopeful.

Dang girl.

Peace

Tom

[Judy M2]

Tom, very well said. I'm so sorry about your friend's ordeal and can relate. My sister-in-law also suffered with and died from Stage IV pancreatic cancer which was diagnosed too late for treatment. As her caregiver, my husband went through a horrible experience with managing her pain and her subpar hospice provider. It has scarred him for life. I hope that you and your friend can somehow recover from the trauma of your shared loss. 

[LUNGevityKristin]

Just sending you a big hug.  Is he working with a Palliative Care doctor to help manage side effects and symptoms?  They work with patients in treatment and might be able to make him more comfortable.

[Tom Galli]

I don't have a clue about how to handle your BF's daughter. But, I do have some ideas on pain relief.

First, could you more precisely describe his arm and leg pain. Is it muscular or is in in the arm and leg joints? I had very severe joint pain as a side effect from Taxol and Carboplatin. It would start about 48 hours after infusion, rage for about a day, then stop. It was disabling.  I used two prescriptions that gave "some" relief: Lidocaine Ointment USP, 5% and Voltaren Gel 1%. Both worked to reduce but not eliminate the pain. Of course, I had narcotic medications that didn't really relieve the pain but made me not care about it.

Stay the course.

Tom

[islandgirls]

Thank you all.

I’m slipping.

Tonight my family and friends basically had an intervention and told me to prepare myself for the worse: He won’t survive.

They said that I am getting biased information from a “handful of survivors” when there are literally thousands of people who don’t survive... now, let me say that I do NOT believe that! I believe there is HOPE. (I must be in so much denial...)

I know they have my best interest at heart. Because let’s face it: I have given this my ALL. Not sure how I will survive if this goes south.

I am so torn. My gut says don’t give up but I see that the Daughter and odds may win.

But... I am obviously delusional because I still have faith that tomorrow’s scans will show response and not progression.

My fam/friends are telling me to go to Monday’s appointment even though Daughter is supposed to go... I think I may have to confront Boyfriend and say either I go or I’m out... sounds selfish to say out loud but he needs an advocate not an adversary.

This is the worst night I’ve had since diagnosis.

Again, I thank you all so much. You have no idea how much this forum has helped me thus far. 💜

 

 

[LexieCat]

Well, I'd venture to say that long-term survivors ARE still in the minority. But that doesn't mean that another three or four years of good quality of life isn't worth trying to get to. We all have our point at which continuing to struggle is no longer worth the effort--when the odds become simply too great and the (metaphorical) price of continuing to treat outweighs the likelihood of any real benefit. I plan to continue to undergo treatment until I hit that point. But I don't have a crystal ball (and neither do you, your b/f, or his daughter) to know what that point might be. It could be a year from now, 5 years from now, or, if he's truly fortunate, he will never get there because one of these treatments will work over the long term for him.

But I agree--you can only encourage a person so much. Ultimately, it's his life. 

I once had a husband (not my kiddos' dad--this was my second husband) who survived liver failure due to alcoholism. All the doctors thought he'd need a liver transplant. Miraculously, his liver condition resolved and they said he'd be fine, as long as he gave up drinking, for good. Well, he went back to it. I encouraged and supported as long as I could and I finally concluded that I had no obligation to continue to stand by someone who was not taking the minimal steps required to save his own life. I had to leave for my own emotional well-being.

I'm not suggesting what you should do--I'm just telling you my own experience. Incidentally, to the best of my knowledge that ex is still alive and still drinking--that was 25 years ago. But I'm sure glad I was out of the drama.

Sending a hug.

[LexieCat]

I'd like to add one more thing--nobody can tell you what you can/can't tolerate from an emotional standpoint--every person is different. But we here on the forums are here to support you/him as long as you'd like the support. If he chooses to stop treatment and you decide to stay with him through that, we will continue to support you and him through whatever comes. IOW, nobody here is going to judge you for not urging him to continue treatment. We understand that it's ultimately up to the patient whether/how long to continue with treatment.

Just wanted to be sure you know that.

[LouT]

Lexie, said it well.  "We will continue to support you..."  Stats are stats, and yes, people do die of cancer each and every day, but there are also people who survive when few thought they would.  It really is up to your boyfriend.  You are the caregiver, demand your place during the meeting and if he decides to stop everything and you feel that would be too much for you then you have to consider other options.  Caregiving is a tough role to fill.  I provided care 24/7 for my my wife for 3 years and it ended with me winding up in the hospital. 

So, understand what his desires are, stop looking at this as you against others (he makes the decision) and carefully consider the implications of being a caregiver.  I pray that you'll have easier days.

Lou

[islandgirls]

Thank you, once again, for your never-ending support.

@LexieCat you did say it well... it was no accident that I found this site... you and @LouT and all of you continue to be a Godsend for me.

He is on his way to the scans now. We shall see what they reveal. Didn’t someone say that the results have to be posted on My Chart within so much time of them being performed? Not sure how that works and especially it being the weekend.

I will be talking to him later today to just lay it out for him about me going to the meeting with the oncologist. We are supposed to be going to the Cardinal game tonight... just praying he feels well enough for that, as that seems like A LOT of energy.

As always, hugs to all of you fighting the battle, yet still having time to show compassion and support for him and me. 💜

[LexieCat]

This is just my perspective, but I never want to look at my scan reports until the doctor is there to explain it. The radiologists who write the reports are NOT oncologists/cancer experts. So sometimes what they write can cause worry/freaking out when it really doesn't mean much in terms of the response to treatment. The oncologist knows the big picture. Just a suggestion--why give Debbie Downer something to run with if it isn't necessary?

[Judy M2]

I so totally agree with Lexie. At any rate, my scan reports aren't posted until well after my oncologist has discussed the results with me, so I don't have that option. Hoping for good results for him.